Pediatric

Emergency

Ethical Issues in Pediatric Critical

Care
Ethical Issues in Pediatric Critical Care

Outline:
- Ethics (moral philosophy)
- Hospitalized child rights
- WHO Children’s rights in hospital standards:
- Code of Ethics / principles of ethics
- Ethical issues in pediatric critical care
 Permission for treatment
 Decision-making standards in pediatrics
 Issues specific to end-of-life care
 Do Not Attempt Resuscitation Orders
 Artificial nutrition and hydration
 Pediatric organ donation and transplantation
 The determination of death
 Withdrawal of chronic dependent technology
 Patient Confidentiality
 Pain Management
 Child euthanasia

Introduction
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Ethical Issues in Pediatric Critical Care

Moral distress is ubiquitous in PICU settings, impacting team members from all
different disciplines. Distress arises from the critical nature of the patient’s illness, with
many children facing either death or living with life-long disability. Values used for
decision making vary widely among patients’ families and multiple team members,
leading to tension about “right” and “wrong”. Additionally, differ- fences in experiences
among parties contribute to difficulty arriving at conclusions along the same timeline.
Although many know when they feel moral distress, it can be difficult to define.

Caring for critically ill children in an intensive care setting must be aware of the
potential ethical issues and dilemmas. The four pillars of medical ethics, autonomy,
beneficence, non-maleficence, and justice, provide a clinical framework for decision-
making. In a PICU setting, health care providers must be professional in handling the
‘difficult parents’ and provide the precious and scarce resources for professional patient
care. A sensitive and thorough understanding of the interplay of the contributing factors
in ethical dilemmas would surely help nurses fulfill their duty of care to each individual
patient.

Definition:

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Ethical Issues in Pediatric Critical Care

Ethics (moral philosophy):

The discipline concerned with what is morally good and bad and morally right
and wrong. Or it is a branch of philosophy that "involves systematizing, defending, and
recommending concepts of right and wrong behavior".

Hospitalized child rights

These four broad categories of rights are equally important and mutually
reciprocal.

1. Survival Rights refer to all those that the child needs to live. In the hospital
environment, survival is giving safe, efficacious, and cost-effective medical care
at the appropriate time. Survival rights include the right to life; to adequate
standard of living; to health; and to parental care and support.
2. Development Rights refer to all those that the child needs to become mentally,
spiritually, socially, emotionally healthy person. Development rights include the
right to freedom of association; to appropriate information; to education; and to
leisure, recreation, and cultural activities.
3. Protection Rights refer to all those that child needs to be protected from abuse,
neglect, and exploitation in all forms, whether physical, mental, emotional or
sexual. Protection rights include the right to preservation of identity; to family
reunification; against illicit transfer and non-return; to protection from abuse,
neglect, and sexual exploitation.
4. Participation Rights are all those that the child needs to be able to be one with a
group and to be a part in decision-making concerning his or her welfare and
development. Participation rights include the right to name and nationality; to
opinion; to freedom of expression; to freedom of thought, conscience, and
religion; and protection of privacy.

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Ethical Issues in Pediatric Critical Care

Some elements to be considered in ensuring the survival, development, and protection

and participation rights of the hospitalized children are:

 Safe environment,
 Caring environment,
 Child-sensitive medical procedure and treatment,
 Available information and open communication,
 Accessible development opportunities,
 Protection from further abuses and preservation of dignity, and
 Significant value on children’s participation

WHO Children’s rights in hospital standards:

Standard 1: Quality services for children

Standard 2: Equality and non-discrimination
Standard 3: Play and Learning
Standard 4: Information and participation
Standard 5: Safety and environment
Standard 6: Protection
Standard 7: Pain management and palliative care
Code of Ethics / principles of ethics

There are four main principles of ethics: autonomy, beneficence, justice, and non-
maleficence.

1. Respect for autonomy: a competent patient has the right to refuse or choose their
treatment.
2. Beneficence: a clinician should act in the best interest of the patient.
3. Nonmaleficence: “first, do no harm” or avoid harming the patient
4. Justice: making sure that those in similar circumstances are treated the same,
whether concerning the distribution of scarce health resources or who receives
which treatment (fairness and equality).

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Ethical Issues in Pediatric Critical Care

Ethical Issues in Pediatric Critical Care

Permission for Treatment

Except in situations where a patient’s life is under immediate threat and the
patient or surrogate cannot participate in a deliberative process to decide on a course of
action, health care providers cannot intervene without appropriate authorization. To the
distress of many, the blanket consent forms used on admission to a hospital or for
transport of a patient to a tertiary care facility do not give doctors, nurses, or others leave
to undertake any and all measures. Since the judicial articulation of the doctrine of
informed consent,6 " current thinking in ethics and law places the patient or the patient’s
valid surrogate at the center of the medical decision-making process. It is the patient or
surrogate who must, at a minimum, provide the overall direction for the patient’s care.

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Ethical Issues in Pediatric Critical Care

Even in intensive care units (ICUs), where the pace and volume of activity may make
extremely detailed or minute-by-minute patient or surrogate decisions impractical,
families should be included in most decisions.

Accordingly, a consensus now exists that health care professionals should

ascertain:

1. that the person providing permission has the mental capacity (known in
the law as competency) to understand what he or she is being asked to
authorize
2. that the individual has adequate and understandable information about the
benefits, risks, and alternatives to the proposed intervention (including the
alternative of no intervention)
3. that the person authorizing the care understands the situation, including
the benefits, risks, and alternatives
4. that the permission is given freely, without any sense that patient or
surrogate is being forced to accept a procedure or treatment he or she does
not want.

Decision-making Standards in Pediatrics

For children who have not yet reached an age at which they are legally allowed to
make their own decisions (typically 18 years old), autonomy is not an irrelevant concept;
their opinions are still deserving of respect, even if they are not legally binding. For this
reason, clinicians may seek the assent of a child for treatments or procedures, whenever
it is feasible and appropriate to do so, along with informed permission from the parent or
other authorized decision maker. The assent/permission framework is usually more
appropriate than the term informed consent when one is speaking of decisions being
made for another.
For children, the parent or parents are usually the appropriate surrogate decision
maker. Most institutions have policies consistent with the relevant state laws about who
is the next appropriate surrogate if a parent is either unavailable or an inappropriate

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Ethical Issues in Pediatric Critical Care

decision maker. Other possible surrogates include extended family or court- appointed
guardians. Yet, even when the medical team believes that a parent may not be a reliable
surrogate (eg, in cases of suspected child abuse), a specific legal process must be
followed before that parent’s decision-making rights can be terminated. The team should
continue to keep a parent informed and included in decision making while any such legal
process is under way.

Informed consent Permission obtained from a competent patient to perform a

specific test or procedure. It implies understanding of the medical
test or procedure (and of its alternatives) and autonomy in the
decision-making process
Informed Approval or agreement to a diagnostic test or medical intervention,
permission usually expressed by a parent or proxy on behalf of a minor or
other person lacking medical decision-making capacity
Assent Approval or agreement to a diagnostic test or medical intervention,
usually expressed by a minor or other person lacking legal
decision- making capacity
Surrogate A health care proxy who has decision-making capacity on behalf
decision maker of a patient who is unable or unwilling to give consent themselves

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Ethical Issues in Pediatric Critical Care

Issues Specific to End-of-life Care

Over the past several decades, tremendous advances have been made in the ability
to support failing organ systems in the ICU, sometimes for prolonged periods.6
Mechanical ventilation, mechanical circulatory supports such as ventricular assist
devices, and renal replacement therapies are all examples of interventions that can be
lifesaving. However, there are times when such therapies serve only to prolong the time
that it takes to die.28 It is also possible that even when such aggressive interventions are
life-saving, the quality of life for the patient who is rescued is not believed to be worth

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Ethical Issues in Pediatric Critical Care

the burdens of the therapies. Multiple court cases have upheld the right of competent
adult patients or their appropriate surrogates to refuse life-sustaining therapies when such
interventions are believed to be unlikely to lead to long-term survival or to maintain a
good quality of life.

For children, it is also possible to withhold or withdraw life-sustaining measures

such as cardiopulmonary resuscitation (CPR) or mechanical ventilation when the parents
and medical team agree that the burdens of such therapies outweigh the possible
benefits. Some evidence exists that most children dying in hospitals now do so with some
sort of order limiting the escalation of life- sustaining measures in place

Do Not Attempt Resuscitation Orders

Do not attempt resuscitation (DNAR) orders are used when decisions are made
not to pursue specified therapies. DNAR has recently become a preferred term rather than
Do not resuscitate, because including the word attempt is believed to be less likely to
imply that resuscitation is always successful. Some centers have gone even further and
use the term Allow natural death rather than DNAR, with a goal of emphasizing the
benefit of such orders rather than what will be withheld.

When writing DNAR orders, it is important to be as specific as possible regarding

which interventions are to be avoided. In some cases, the family and team may decide to
limit cardiac interventions such as chest compressions, defibrillation, and medications if a
full cardiopulmonary arrest occurs. In others, a decision may be made not to intubate if
respiratory failure develops (sometimes abbreviated as DNI for Do not intubate).

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Ethical Issues in Pediatric Critical Care

Artificial Nutrition and Hydration

The provision of artificial nutrition and hydration represents a special
circumstance because it is a medical intervention but is believed by many to be a normal
part of caring for a patient, which should therefore not be withheld.

Children differ in many respects from adults when decisions are made about
continuing nutrition, because many parents see providing nourishment to their child as
one of the primary roles of a parent. Children also, in the normal course of development,
depend on others to feed them, so having to do so via feeding tubes or formulas does not
seem unusual. It is generally accepted that nutrition and hydration should be withheld
only when a patient is actively dying or when providing the nutrition is worsening
suffering.

Patients for whom it may be appropriate to consider withholding artificial nutrition

and hydration per American Academy of Pediatrics guideline

1. Patients in the terminal stages of dying for whom artificial nutrition and
hydration only prolong the process and may increase morbidity.
2. Patients with severe life-limiting organ failure such as intestinal or cardiac
failure, for whom the provision of artificial nutrition and hydration is shown to
cause significantly more burden than benefit.
3. Patients who permanently lack consciousness, such as patients in a persistent
vegetative state.
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Ethical Issues in Pediatric Critical Care

Pediatric Organ Donation and Transplantation

Advances in surgical technique, critical care, and immunologic therapies over the
past 60 years have enabled organs obtained from both living and cadaveric organ donors
to save or improve the lives of many patients with end-stage organ failure.

Organ donation and transplantation raise innumerable ethical issues, ranging from
what constitutes valid consent for donation, to concerns about the just distribution of
scarce resources, to questions about how to define death.

In this section, primarily ethical issues that surround the procurement of organs
from patients declared dead by neurologic or circulatory criteria are discussed. Although
many issues of consent, coercion, and fair distribution are also raised by living donation,
a full discussion is beyond the scope of this article because it is rare for children to be
suitable living donors (other than through minimal risk procedures such as bone marrow
donation). Procurement of organs from patients who have died generally follows 1 of 3
paths:

1. After a declaration of death by irreversible cessation of neurologic function

2. After a planned withdrawal of technological support (controlled organ
donation after a circulatory determination of death DCDD)

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Ethical Issues in Pediatric Critical Care

3. After a cardiac arrest, when return of spontaneous circulation cannot be

achieved (uncontrolled DCDD; uncommon in the United States but frequent
in some European countries)

The Determination of Death

Before the advent of modern critical care, there was some variability in the
methods used to determine when death had occurred. However, it was not until the
development of mechanical ventilation that it became apparent that some patients could
be maintained with artificial supports even after all detectable brain function had ceased.
This situation was first described as coma depasse´ in the late 1950s in France. The
technological advances of critical care thus spurred a reexamination of what constitutes
death and how it is best diagnosed. The concomitant refinement of organ transplantation
techniques also led to a related need to come to a societal consensus on who was eligible
to be an organ donor.

A President’s Commission in the United States therefore developed guidelines

for determining death, whether by cardiopulmonary or neurologic criteria. These efforts
culminated in the Uniform Determination of Death Act, a draft state law approved in
1981 by the National Conference of Commissioners on Uniform State Laws which states
that;

An individual who has sustained either

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Ethical Issues in Pediatric Critical Care

1. irreversible cessation of circulatory and respiratory functions, or

2. irreversible cessation of all functions of the entire brain, including the brain
stem, is dead
Irreversible cessation of brain function, total brain failure, or death determined by
neurologic criteria are more appropriate terms than the commonly used brain death,
because brain death implies to some that only the brain is dead, not the individual. A
patient who has irreversible cessation of brain function is clinically and legally dead,
even if some somatic functions are maintained by technological support. In the United
States, declaration of death by neurologic criteria requires documentation over time of the
absence of cortical and brainstem function, which can be determined clinically or by
reliance on confirmatory tests, such as electroencephalography or brain flow isotope
studies.

Even within the medical community, the determination of death by neurologic

criteria is not without controversy and misunderstandings. Some argue that the concept of
death by neurologic criteria is fundamentally flawed, because patients diagnosed with this
condition have the capability to maintain an extensive range of integrative functioning of
the organism as a whole, such as hemodynamic stability, maintenance of body
temperature, the elimination of wastes, or maintenance of a pregnancy.

Some countries rely on brainstem criteria, rather than focusing on the function of
the entire brain. Some religious or cultural communities reject the concept of neurologic
criteria altogether, and some states caution against or forbid overriding a family who has
objections to diagnosing death in this way. Conflict in such cases can be difficult for
families and hospital staff, and early involvement of hospital administration, legal
counsel, and religious leaders from the patient’s community should usually be sought.

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Ethical Issues in Pediatric Critical Care

Withdrawal of Chronic Dependent Technology

The deactivation of technological support can be emotionally difficult for all
involved, including patient, family and health care members. But the moral distress
experienced should not indicate lack of ethical or legal permissibility in this matter.
Legally and ethically, there is no difference between a decision to withdraw a therapy and
a decision not to start it in the first place. Emotionally, of course, there is a big difference.

In any situation in which a patient or parent may consent to or refuse the initiation
of a technological therapy, they may choose to have it discontinued. This applies to
support such as mechanical ventilators, dialysis treatments, artificial nutrition,
pacemakers, and ventricular assist devices. A patient cannot be required to rely on
artificial support to maintain an essential function a body cannot provide for itself. The
patient’s clinical situation may change, making what was acceptable to the patient and
family before no longer acceptable now.

It is our moral duty to engage with the patient and family, not just about the
initiation of technological support, but also about the longitudinal responsibilities and
decision making that will come with it. Rizzieri et al. put forth recommendations on
approaching conversations and planning when using technological support or chronic
medical therapies for destination therapy, Rizzieri et al. advocate for using an early
palliative care type approach with prerequisite conditions which must be met:

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Ethical Issues in Pediatric Critical Care

1. Involvement of the full multi-disciplinary team, including early involvement of

palliative care specialists
2. A concise plan of care for anticipated device-related complications
3. Careful surveillance and counseling for caregiver burden
4. Advance-care planning for anticipated end-of-life trajectories and timing of
device deactivation
5. A plan to address the long-term financial burden on patients, families and care-
givers

Patient Confidentiality
Violating a patient’s confidentiality can have legal and ethical consequences for
healthcare providers, according to the Health Insurance Portability and Accountability
Act (HIPPA). The act requires physicians to protect the privacy and security of a
patient’s medical records. HIPPA also sets forth who can see the confidential information
and who cannot. Despite the law’s straightforwardness, there are some gray areas.

For example, withholding information about a patient’s condition could be

unethical because it could harm the patient or someone else. The opposite can be harmful
too. A health practitioner could be suspended or, in some cases, fired for posting
information about cases on social media. Despite how unintentional a practice like that
can be, HIPPA laws prohibit any disclosure of health information on social media
channels, arguing that a patient loses their privacy immediately after the fact.

Pain Management and Palliative Care

The ethical mandate to treat a child's pain is based on the principles of
beneficence and non-maleficence. Healthcare providers have an obligation to reduce or
eliminate pain and suffering by assessing and managing it using their clinical knowledge
and skill. Relieving the distress caused by pain is an inherently humanitarian act,
embodying the ethical principle of beneficence-doing good for others.

Making comfort the primary goal of management may involve maximizing

analgesic interventions despite hazards such as sedation and respiratory depression, or it
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Ethical Issues in Pediatric Critical Care

may mean withdrawing or forgoing painful or invasive treatments such as CPR,

ventilator, or diagnostic blood work.

The benefits of the relief of pain and suffering include the following:
1. The child may feel more comfortable during the dying process.
2. The child may be more available for interaction with others, allowing the
child and family to connect with each other and/or complete their lifework
together, thereby decreasing isolation and loneliness.
3. The child may experience an increased sense of control over his or her
environment and treatment.
4. Increased activity may allow the child and significant others to share
important experiences together.
5. The child's and family's perception of the treatment or the final stages of
the child's life.
These benefits must be weighed against the physical, psychological, and spiritual burdens
of unmanaged pain that include:

1. decreased interaction, isolation, or immobility,

2. real or perceived sense of abandonment,
3. anxiety and fear about being in pain without relief,
4. loss of trust in and fear of healthcare professionals,
5. irritability,
6. nightmares,
7. decreased resources for coping and living.

When pain occurs at the end of life, additional burdens include avoidance of the
reality of death and decreased opportunities for child and family to complete their life
work together. Throughout treatment, healthcare professionals may need to discuss with
the child and parents the plan for managing pain during treatment and, when appropriate,
at the end of life. Moreover, a variety of pharmacologic and anesthetic options that are

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Ethical Issues in Pediatric Critical Care

available to manage pain at the end of life that do not produce diminished awareness
should also be explored.

Aggressive pain management at the end of life can be ethically justified based on several
arguments
First, when a patient is dying, one may reason that the obligation to relieve pain
and suffering overrides concerns about hastening death. In assessing risks and burdens,
common side effects of analgesia such as sedation, nausea, and respiratory depression
should be distinguished from rarer events such as the possibility of addiction. Concerns
about respiratory depression, addiction, or tolerance are insufficient reasons for
inadequate pain management in the care of the dying.
Second, the intent of providing sufficient analgesia to the dying person is to
relieve pain in order to enhance living until death occurs. The means to achieving pain
relief in the dying person are distinct from the means to achieving active euthanasia.
Although death may occur secondary to the administration of the medication, it is in
service to the goal of pain relief. Administering enough analgesia to relieve pain, even if
death occurs secondarily, is morally permissible as long as the intent is to relieve
suffering. Such an approach is consistent with American Nurses Association (ANA)
"Code for Nurses.

Child Euthanasia
Child euthanasia is a form of euthanasia that is applied to children who are
gravely ill or suffer from significant birth defects. In 2005, the Netherlands became the
first country to decriminalize euthanasia for infants with hopeless prognosis and
intractable pain. Islam forbids any form of euthanasia, as it is determined by God how
long a person lives. Life is a sacred thing bestowed upon humans by God.

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Ethical Issues in Pediatric Critical Care

The term “euthanasia” is derived from Greek, literally meaning “good death”.
Taken in its common usage however, euthanasia refers to the termination of a person’s
life, to end their suffering, usually from an incurable or terminal condition. It is for this
reason that euthanasia was also coined the name “mercy killing”.

Types of euthanasia are:

1. Active euthanasia refers to the deliberate act, usually through the
intentional administration of lethal drugs, to end an incurably or terminally
ill patient’s life.
2. passive euthanasia: to describe the deliberate withholding or withdrawal of
life-prolonging medical treatment resulting in the patient’s death.

Advocates of euthanasia argue that people have a right to make their own decisions
regarding death and that euthanasia is intended to alleviate pain and suffering, hence
being ascribed the term “mercy killing.” They hold the view that active euthanasia is not
morally worse than the withdrawal or withholding of medical treatment, and erroneously
describe this practice as “passive euthanasia.” Such views are contested by opponents of
euthanasia who raise the argument of the sanctity of human life and that euthanasia is
equal to murder, and moreover, abuses autonomy and human rights.

References:
Brouwer, M., Kaczor, C., Battin, M. P., Maeckelberghe, E., Lantos, J. D., &
Verhagen, E. (2018). Should pediatric euthanasia be legalized?. Pediatrics,
141(2).

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Ethical Issues in Pediatric Critical Care

Hon, K. L. E., Leung, K. K. Y., & Wong, J. C. P. (2021). ETHICAL DILEMMAS IN

CRITICALLY ILL CHILDREN: A HONG KONG PERSPECTIVE. Pediatric
Critical Care Medicine, 22, 234.

Kodish, E. (2020). Pediatric Euthanasia. Physician-assisted Suicide and Euthanasia:

Before, During, and After the Holocaust, 291.

Liu, H., Su, D., Guo, X., Dai, Y., Dong, X., Zhu, Q., ... & Wu, S. (2020). Withdrawal
of treatment in a pediatric intensive care unit at a Children’s Hospital in China: a
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Lyu, C., & Zhang, L. (2018). Who decides in withdrawal of treatment in a critical care
setting? A case study on ethical dilemma. International journal of nursing
sciences, 5(3), 310-314.

Marron, J. M., Jones, E., & Wolfe, J. (2018). Is there ever a role for the unilateral do
not attempt resuscitation order in pediatric care?. Journal of pain and symptom
management, 55(1), 164-171.

Mathur, R. (2020). ICMR Consensus Guidelines on ‘Do not attempt resuscitation’.

Indian Journal of Medical Research, 151(4), 303.

Morton, K. E., Richardson, A., Coombs, M. A., & Darlington, A. S. E. (2019).

Transferring critically ill babies and children home to die from intensive care.
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Nakagawa, Y., Inokuchi, S., Kobayashi, N., & Ohkubo, Y. (2017). Do not attempt
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O’Keefe, S., Maddux, A. B., Bennett, K. S., Youngwerth, J., & Czaja, A. S. (2021).
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Pant, S. (2021). Ethical Issues around Death and Withdrawal of Life Support in Neonatal
Intensive Care. Indian Journal of Pediatrics, 1-5.

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Robinson, J. O. (2021). Ask me later: deciding to have clinical exome trio sequencing
for my critically ill child. Genetics in Medicine, 1-2.

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